THE ELGAN-ECHO Research Study

Welcome to the ELGAN (Extremely Low Gestational Age Newborns) Research Study Family Website!

The ELGAN Study received new funds from the National Institutes of Health (NIH) so we can continue to learn about children born at Extremely Low Gestational Ages.

The NIH selected ELGAN, along with similar studies in the United States, to join together in a study of about 50,000 children to learn how the Environment influences Child Health Outcomes (ECHO). You can read more about ECHO at www.nih.gov/echo.

Study Site Coordinators are now reaching out to ELGAN families to share additional information, assess interest and update contact information. In-person visits will begin in early Fall 2017.

ELGAN researchers have followed over one thousand children born at least 3 months early between 2002 and 2004 at 14 different hospitals in 5 states. We assessed these premature babies at birth and again when they were two years old. In the first few weeks after birth, when the babies had routine blood tests, we saved a drop or two for later testing. Through analyzing these saved blood samples (Fichorova Laboratory, Brigham and Women’s Hospital), we learned that children who had signs of inflammation in their blood were more likely to have development problems when they were 2 years old.

In this continuation of the ELGAN-ECHO research study, we want to learn more about the strengths and difficulties of children who are born prematurely. We want to find out if molecules present in the placenta and in the drops of blood collected years ago can tell us more about learning and behavior when the children are high school age (about 15-18 years old).

We are planning study assessments of teen health and wellbeing including reasoning skills, behavior, emotions, sleep patterns, and overall quality of life. In addition, we plan to measure the teens’ weight, height and head circumference, and ask for permission to collect a cheek swab and urine sample. Teens will also be offered the opportunity to have a brain MRI scan (Magnetic Resonance Imaging).

We believe that this work has potential to make a difference in the care and outcome of children born very early. If what we learn is confirmed we will have made an important contribution to preventing learning and behavior problems in children. This goal was a driving force behind the ELGAN Study when we started over 15 years ago and it continues to inspire and energize ELGAN-ECHO 3 team members today.

Every child enrolled holds an important piece to the puzzle for improving our knowledge about prematurity, child environments, and having the healthiest and most satisfying lives possible.